Mollaret’s meningitis reloaded, and ‘how to change your life, and still have one’: Feedback and additional advice sought

[JustinP]

Hi Guys,

I had planned to make this post about 6 months after my last bout of VM, but things moved in some odd directions for a while, with a bit of a relapse for good measure. However, it’s now a good time to share back some updates for anyone interested/bored of the tennis. Thanks again to all the previous respondents on tips/advice/helpful words and encouragement, and I hope this can offer the same to others on the same/similar journey. Also, if anyone can provide any further input to the below, please do share. This is just reflections from my journey and I know it can be done better.

So, I’ve tried a bunch of mental/physical/spiritual stuff over the last 9+ months to handle the "post-viral syndrome" I have been diagnosed with (which I think is just a catch all for “the VM symptoms haven’t gone away yet”; funny that). Here are my top 10 life-savers, with a short dialogue on the whats and whys. I’ve also set out more detail on the exercise front as felt that did deserve more as it has been a God-send, though, to be treated very cautiously and with the deepest respect. Happy to fill in any blanks/add more detail by PM/the below forum.

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In descending order of benefit, with the first three in level pecking order as they're so inter-related for me now:

1.[You knew it] Rest:

Not just the common-garden rest (though gardening is one version of the below trinity for me) but that ‘active’ sort which oscillates between mindfulness and 'restful' use of the body and mind together. As a close friend said better than I recently, “human being” rather than “human doing”, but with a slight - and I mean slight - raising of the pulse. I've not yet mastered this but I plan to, eventually.

1.[You knew it again] Time:

It’s now 9+ months since my last full-on bout, and I thinking that I’m about half-way back. Some aspects of recovery are further ahead than others, though I think the new me will be formed fully I figure in about 18 months from ground zero (with a standard caveat for setbacks and another bout raising its ugly head). So, 2 years is my goal.

1.Physical exercise:- matched to how I was feeling 24 hours ago and not currently as that seems to be a total red-herring:

The significance of this took me by surprise really, and I’ve mentioned it in some length below (which you can skip it if you want a skim read but also see Jonad’s reply on Abidevlin’s recent post (Post Viral Meningitis - Don't Feel Like Me Anymore) and various previous posts for timelines and cautionary tales. When combined with Rest and Time, it has been a winner for me, such that the below tips are icing on that VM recovery/maintenance cake.

4.Sunlight/Indirect Sunshine

This is more than just feeling a bit better when it’s nice outside; sunlight fuels my mental energy tank like liquid gold but I still can’t handle too much of it (hence the indirect nuance) and a siesta + a pair of decent sunnies are a must on a proper summer’s day, and a cloudy sunny day between midday – 1400 works wonders.

(Jonathan – If you are reading, I’m thinking that your S.A.D diagnosis may be worth me looking into too. There may be something more general to be had on the serotonin front as this and post-exercise hormone spikes are working well. But it's not depression as such. Weird.)

5.CoQ10

Again, my thanks to Jonathan. This supplement is the only one I take I can say for sure works, and well. For me, it helps combat both headaches (within 20-30 mins, taking one down the scale up to 20-30%), and provides physical energy (one a day for energy in the morning and another(s) during the day for headaches). As an FYI, I have tried to save costs and can honestly say that only Holland & Barrett’s version (125mg) works for me, and I'm not on commission The bioavailability of others I’ve had, which all come highly recommended, seem to be questionable to the extent that some are not worth the bother.

6.Cranio-osteopathy:

I didn’t get the Glittergirl feeling but this has helped overall with opening my sixth chakra, re-positioing my recovery overall structurally* and provided temporary headache relief until it's knocked out by mental stress. Oddly it wasn’t exhaustion/energy levels that killed the feeling, but stress. Overall, VM had certainly knocked me off balance structurally and my “tide” was at a low ebb, and this is helping to re-hinge me. However, I know I’ve not had the full benefit yet and both my cranio and acupuncture support team figure I’ll benefit from both together. I had wanted to do this but it didn’t work out that way till now. Here’s hoping for more benefit to come!

*It also has, but will require ongoing treatment, helped lift a previous physcial trauma that may have led to me being here.

7.Diet, vitamins and supplements:

CoQ10 deserves its own section above but I have reduced supplements to the minimum by trial and error and feel the body has thanked me for it; there is less stuff to deal with. It’s all personal choice and essentially I now take a cod liver oil tablet with an embedded multi-vitamin (washed down with 2 teaspoons of coconut oil in water as they're oil based – thanks Catherine :-)).

Diet wise, overall I now just eat more healthily though haven’t got round to smoothies yet, but take in a load of fruit and veg (I know others swear by caveman diets and I think, whatever works for you, do it right and well).

I still have an ayurvedic chai tea which is entirely personal choice and more for the mindfulness of making it than anything (though the spice mix may help, a touch), and my cuticles are still a mess despite the coconut oil, but what goes into the engine has made a bunch of difference.

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8.Personality changes + mindfulness:

Overall, the new me is growing and I’m observing and carefully tinkering with how this is playing out (I’m trying to take a degree of control; see CBT below). Rather than be scared at these developments, some of which seem unfortunate, I’m mindfully reflecting via free online tests (Myers Briggs ones mainly) and family and friends what I used to be like, and how I’m changing. Combining these new developments with counselling for what I’ve left behind has worked well, and may continue to do so as I come back fully.

Interestingly, seemingly small changes – e.g. having to give in to a higher level of chaos/entropy due to forgetfulness – are bringing some larger changes. That is, making decisions is becoming harder and I’m becoming less empathic in terms of not taking others' pain onboard (relatively), and needing to help others to meet my own needs is reducing (these are all relative and subtle but my self-centre is, well, centering, and possibly that's long overdue). The reverse is what we, and certainly others focus on, but there are 2 sides of all coins, and it's not all bad! This objective knowledge is taking some of the sting out of the changes, and CBT is starting to assist with steering them to a degree. For those ahead of the curve, maybe CBT could help more proactivity though I'm running to catch up.

9.Paper diary/master list:

I’ve no magic cure to the memory issue so lists are still the way forward (which sucks), and training myself to use them (over-confidence that I’ll remember always getting in the way). I’m a big fan of adding daily events down to boost the completed status and, for me, this reward chart (much like my kids’ :-)) works really well, especially on a duvet day. Also, I’ve heard that mindfulness will help me too in the long-run but I’m not there yet. Till then, paper and pen are a must to stay on top.

10.Caffeine, sparingly:

I know this is not everyone cup of tea (sorry, couldn't resist) and I’ve flipped backwards and forwards on this, but it does help, in moderation. For me it works a bit like recoding TV and time-shifting the pain so you can have it a little later! If you time it right, which with mindfulness, exercise and CoQ10 can be done, it can land fully just before bedtime which is handy.

In more detail - Of the three pillars of my energy (mental; spiritual; physical), physical fitness now acts much like a governing/supporting wall to the other two and is having three resounding success stories for me:

A.Exercise and the mindfulness that comes with it has proven to be singularly the only thing that can make a headache go away. I’ve tried pretty much everything I’ve been advised to take/do/avoid, and this is the thing that means I can itch the scratch nothing else could reach, though it can't do that much when the Meningeal-Richter scale is hitting 6+. However, I saw a great post by Bonkitty this morning on various meds that can help with the headaches and will be looking into those. Thank you again Catherine!

B.Physical fitness really helps when the mental or emotional tanks are being drained. It seems to work less as a back-up when the other tanks are empty, and more of a battery-extender (much like a new laptop) when you get the 10%-20% warning if that makes sense. And if I go beyond the extender…

C.Where I used to lie where I collapsed (if my good lady wasn’t around to fix that), I now have about 15 minutes to make it to a safe zone rather than 15 seconds. This is a God send and great for morale and avoiding the kids seeing things no-one should see at their age. It’s kind of like the muscle-memory has taken the place of short-term memory. Go figure.

However, it is without doubt the hardest thing to manage in terms of balance – too much and the wall erodes rather than supports the other pillars, and too little and it feels like the muscle-memory lapses. It has also taken literally months to go from shuffling like my grandpa to the shop, through soft-play centres to having the stamina to get a real benefit, and a buzz. On a much deeper level, A and C seem to work well with any level of exercise, though the more the better (noting the balance thing), but I’ve found B only starts to fill the reserve tanks after 45 mins or so of effort, so an hour and half session is the best for me. I need to look into this more but I’m sure it’s hormonally led (testosterone and growth hormone maybe). One for me to study more.

PS, My exercise to date has been cycling. A good tip learnt the hard way if this is your thing – cycle in concentric circles round your base, widening out as you go week by week/month by month. You never know when you need to go home really quickly and find the shortest radius to get there!

There are so many other things that have helped but didn’t make it (for me) to the top 10, and I don't play to give them up (e.g. chocolate; laughter – mine as well as others; the sounds of nature; etc) but I'm factoring them into the above 10 as best I can.

In case it helps, some reflections on things that I really need to avoid. I know X and Y are common, but is Z?

X.Mental exhaustion:

This is still the no1 cause of my downfall. I’ve reflected at length on the distinction between this and stress-proper, and the latter in its normal healthy state (inducing heightened awareness and activity to achieve a wanted objective) actually doesn’t cause any issues and can even be beneficial. That is, so long as the time period to achievement isn’t too long, it’s actually possible to achieve, and I want the objective (rather than am doing it for another). It’s the prolonged/continued failing to achieve/completing someone else’s objectives on the wrong side of the blood pressure curve that’s the killer.

Y.The usual painkillers (esp, Paracetamol; Codeine; Ibuprofen):

Seriously, whether this is due to an inflammation based condition or another failure to work, habituation or other reason……they just don’t cut it anymore, and I’m not sure if they had more than a placebo effect before. I’ve substituted them with mindfulness, exercise and trigger-avoidance. I’ll be checking out Bonkitty’s list very soon though, and this may change!

Z.Rapid changes in atmosphere pressure:

I’ve no idea how to manage this but I now watch the weather like a hawk, and if the Low bubbles are coming in on the back of the High isobars on the forecast, I run for the duvet. My Granny’s bones have nothing on my ability to predict the next 3-6 hours of local weather through my meningeal-barometer! Sadly being able to predict the weather one is currently having is of little financial use.

For anyone I’ve not yet bored to death….things I’ve started to try I’d be thrilled to get more feedback on, and will do so myself in due course, all of which are working really well for me so far are:

1.Cognitive Behavioral Therapy, the REBT version – This is quite challenging which is partly the point I guess and I’m only 5 sessions in. However, it is providing personality insights as well as giving me a tool-kit to remodel aspects of my life that need to change. I’m told it will take 12-20 sessions to generate a real benefit and takes a lot of commitment, but early signs are encouraging.

2.Acupuncture – My cranio work ran into a wall where structural benefits met diminishing returns. Jump starting the electrical circuits is believed to be my way forward, and already I have more energy from 4 sessions. Not tons yet, just more. Hopefully, together, they can help my system get out of ‘hibernation’.

3.Mindfulness/meditation – I used to do this for reiki practice but had forgotten the art. With cranio work, acupuncture and mindfulness, I may get back on track to work on myself too. Reported benefits are broad, including memory recall, so here’s hoping! Combining this with relaxing CDs (I’ve dug out my reiki ones) is a real winner so far. Thanks for the previous reminders from this forum, and to Autumn2014 for the book suggestion which is bang-on!

Things I need to try from past advice/tips still include – yoga/pilates; swimming (for all the good reasons); chiropractor for a second opinion on my last skull scan (MRI) which was inconclusive; smoothies; and reiki (once I’m further down the road crash recovery). And anything else I find along the way.

For anyone who made it this far, this isn’t earth shattering stuff I know – Take care of yourself, live and eat well, and change what’s not working for what is (and the meaning of life is 42 for the Monty Python fans :-)). But by crickey, it has certainly helped me, and hope it can others too. Please do share back your experiences as we can pave the ideal recovery road together I believe, as there’s no-one else out there with more knowledge than us, right!

Be well, and best of luck. And please please please, gently does it on the exercise. I really do mean it has taken me months to get 1.5 hours cycling in, and up and down stairs and to the shops and back was a great achievement for some months. Be proud of yourself for less is my new motto

Justin

[Jonad724]

Really useful Justin, thank you and do get the SAD checked out. I also avoid caffeine but because it causes an involuntary twitch like reaction followed by passing out. 42 being the meaning of life is though from the Hitch Hikers Guide to the Galaxy by Douglas Adams (I've just read the Python's Autobiography) :-). I am now just a tad over a month away from my third half ironman triathlon having started where you did so I can endorse your views on exercise and pretty much everything else. I'm not sure I actually know what mindfulness is but if it helps then go for it. I found Paul McKenna's relaxation hypnosis CD worked really well too, the Mollaret's is triggered by stress with me so it can't play fast enough at times!

I also had CBT when I had mental health problems in 1997 and it does work a treat for taking care of yourself. It has also made me a much better project manager as well which is good because I'm self employed and being better is a real bonus!

Brilliant that your making such good progress and this is a real inspiration for those that will follow us in recovering from VM.

[JustinP in reply to Jonad724]

Hi Jonathan, thanks so much and sorry for the late reply. It has been an interesting period with further medicals. Not yet on the SAD front but I saw a Prof of Immunology and he thinks I don't have Mollaret's but have been suffering from the original bout of VM from 3.5 years ago, and work stress is perpetuating the symptoms. Go figure - round and round we go, and where we get off.....!

I think your caffeine reaction is similar to mine to alcohol (mores the pity). I'm determined to be able to have a real ale again one day though. This is a real driver for my recovery, but it didn't feel right to add it to my top 10!

It's a great encouragement to see where you've got to health and exercise wise, and some other bloggers I see now and again extolling the virtues of fitness. It provides real experience over hope for us bringing up the rear and while an ironman is probably out of my remit, if I can get back into the woods doing survival weekends again (and getting there by bike), I'll be over the moon

On the mindfulness front, it's just the same place as Paul McKenna's CD will take you too I'd say - just "being in the moment" without the mind trying to apply it's problem solving tactics on everything. I think it's just the new word for being chilled and take it a moment at a time!

I've another CBT sesison tonight and it is already starting to have dividends. So many changes have come to bear, and many more have yet to come. If I get better project management skills too though, that's an added extra I hadn't factored in. I'll let you know how it goes.

And Yes, Monty's crew said something about reading a good book if I now recall rightly. 42 was Hitch Hiker's Guide to the Galaxy. Shame on me. Well, I'll blame the memory but that probably won't stop me being lynched by MP fans

Be well and keep listening to those Venusians!

[sopie in reply to Jonad724]

I believe I remember you posting about the effects of ibprofin meds such as Advil. Was this you???? I know there are some literature discussing this, and was wondering what your thoughts are about this?

[Jonad724 in reply to sopie]

Hi Sopie, I think this was me but with my memory who knows

What I was told by my neurologist was that painkillers like Ibuprofen and paracetamol can only be taken for a maximum of 3 days because the analgaesic effect drops significantly after that as your brain gets used to them. For Mollaret's I take co-codamol which basically just knocks me out. I'm happy to help if I can, please let me know.

[sopie in reply to Jonad724]

Yes this was a help-- I too take pain meds which just put me to sleep-- the only way I can get relief-- been since 2009 since I was hospitalized-- but headaches and stiff neck- ringing in my ears are coming again almost weekly-- not bad enough for seeking medical advise-- or maybe I just endure what I used to question-- but bad enough to ruin a quality of life -- that makes me useful - worse the depression and fear of worsening all but paralysis my ability to be good to anyone and productive as I want to be-- some days like today I cannot get energy to do simple house work-- bummer

[JustinP in reply to sopie]

Hi Sopie, I did write something on a previous post about my neurologist advising me against Ibuprofen/Advil and any other non steroidal anti-inflammatory drugs. I'm so sorry to have replied so late but in looking for that post, I saw your feedback to another post and the reference to the same study I saw (2 cases of recurrent meningitis caused by Ibuprofen) which I'd read after my neurologist warned me Of like minds, as they say.

I have not taken Ibuprofen since and, though I can't say as abstinence has made a noticeable difference, I do feel better limiting myself to paracetamol (acetaminophen) generally. Shame in a way as Ibuprofen is said to be the best for general headaches.

As Jonathan says below though too, I have found that anything taken over time lessens its effects, other than codeine + acetaminophen, but that's a combo to avoid for me for a whole bunch of other reasons!

Sorry again for the delay. I had to go to ground for a period but am surfacing again now. Hope all is 'well'

[sopie]

Justin, thanks for your post. You hit on most of my symptoms as well. I have been dealing with this for years (see my orginal post), and I am sure if only someone could have told me in the beginning to acknowledge the symptoms, and give in and treat them instead of what I was told, which was there is no reason you have these symptoms, therefore, they must not be real, and to ignor them I might have recovered much sooner. I agree, rest is key, diet, avoiding direct sunlight for long amounts of time, such as a day at the beach, is now forbidden for me, when previously, I did not associate the reactions as a direct cause of my headaches, and many more.

thanks for again along with others posting, letting me know it is real, and not my imaginations.